In her own words: living with amenorrhea

Karen is a 30-year-old health care professional. For close to two years, she didn't have regular periods (a condition called amenorrhea). At the same time, she was underweight, exercising a lot, and not eating enough to compensate for this exercise. Now, five years later, she's still exercising, but she's eating well and menstruating-and she is much healthier for it.

What was your first sign that something was wrong? What symptoms did you experience?

I started getting my periods much less often-every other month or every three months. They were also very light and only lasted two to three days. Then, I stopped getting my period altogether. At the same time, I lost about 20 pounds. I had just moved back home after graduating college. And while at college, my eating habits were pretty poor; I drank beer on most weekends, and didn't exercise much. So when I came back to my mom's house where I had healthy meals, very little alcohol, and more time to exercise, I quickly lost the excess weight–and then some.

What was the diagnosis experience like?

The diagnosis was pretty simple. After reviewing my menstrual history and weighing me, the nurse practitioner in my gynecologist's office asked me about my eating and exercising habits. She also did some blood tests to rule out other conditions that can cause amenorrhea. When all of those blood tests came back negative, she determined that the amenorrhea was caused by my quick weight loss.

What was your initial and then longer-term reaction to the diagnosis?

At first, I was relieved not to have to deal with my period. And since the blood tests were all negative, I didn't think it was any big deal to not have my period. But then as we discussed the effects of not having my period, I became more concerned. Since I wasn't having my period, my body wasn't producing enough estrogen, which can decrease bone density. As an athlete, this worried me. It could increase my risk of injury and hinder my performance.

How is amenorrhea treated?

In the short term, the nurse practitioner prescribed me birth control pills, which caused me to have a regular period. I also took a calcium supplement daily to help protect my bones. For the longer term, I worked on gaining weight.

After almost two years of irregular periods, no periods, and periods only while on birth control pills, I was eating better and gained enough weight so that my body would menstruate on its own. For the past five years, I have been at a healthful weight and been having regular periods.

Did you have to make any lifestyle or dietary changes in response to your condition?

I made a conscious effort to eat more and to eat a little more fat. I had gotten somewhat caught up in the "fat free" craze and was eating a lot of salad, vegetables, grilled chicken, and cereal. I wouldn't eat anything that had fat in it. I started allowing myself a little more fat and more calories to meet my energy needs. This was especially important because I was working out so much; I needed more calories than a year earlier when I wasn't exercising regularly.

Did you seek any type of emotional support?

This wasn't an emotionally stressful condition. I talked with my mom about it, and she encouraged me to gain weight. She, as well as my brothers, were concerned that I had lost 20 pounds in such a short period of time. My brothers were especially vigilant in trying to get me to eat more.

Does amenorrhea have any impact on your family?

Other than my mom and brothers worrying about me, amenorrhea really did not affect my family. If I was married and trying to start a family, that would have been a different story.

What advice would you give to anyone living with amenorrhea?

It is important to take care of amenorrhea quickly. The lack of estrogen can cause serious bone loss that you may not be able to regain. Although you may enjoy the freedom of not having a period and the physical and mental symptoms that come with it, it's really not a healthful way to be.
Find the weight that is healthful for you-one that you can easily maintain with your usual eating and exercise patterns and one at which you have a regular period every month. If eating is an issue for you, ask your doctor for a referral to a registered dietitian (RD). An RD can help you develop healthful eating patterns that you are comfortable with.

Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.

This content is reviewed regularly and is updated when new and relevant evidence is made available. This information is neither intended nor implied to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with questions regarding a medical condition.